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Posted 5/30/2009 4:15 AM (GMT 0)
I've been in  flare since Dec. and tonight I see no way out of it. We've tried different meds with  nothing but poor side effects. The DHEA that was supposed to give me more energy has only made my face break  out and have greasy hair. Another of the side effects  is facial hair.............I totally stop at this.  My hair is still falling out. Today it hurt so bad to lift my arm to brush my teeth that I almost didn't do it. The weight gain and edema continue to increase even though the diet is watched carefully and so are the fluids. I'm sleeping in he extra bedroom with my legs up on four pillows in hopes that the swelling will go down some but it hasn't seemed to help. I am really down and had a good cry this evening which helped a little but...I just don't know what to do.

Nurse2

Posted 5/30/2009 4:40 AM (GMT 0)
Bless your heart. Don't give up sweetie, something will change. I know it's frustrating. I have PCOS, which causes facial hair as well, and I know it's awful. You just have to continue to hold your head high and not be ashamed of who you are. You're still alive and around for a reason, there are still people who need you and want you in their lives, and that's something to focus on...even when it seems like everything is against you.
You'll be in my thoughts and prayers.
Posted 5/30/2009 4:52 AM (GMT 0)
hi im new to this site and new to using a computer. i have some of the things u have but not all. and then i have a few things u dont. i am in terrible pain right now which is why im still up. having a good cry is a good thing to do sometimes. do u have hypothyroidism? it causes me to have my hair fall out, gain weight, etc. i have had terrible edema from time to time, but it usually goes away fairly quickly. my weight has fluctuated over the past few years (up and down 60 lbs.). right now i weigh the most ive weighed. it makes the pain worse which makes it harder to get any exercise at all. right now i spend almost all my time in bed. im hoping that will change soon. i have aaaaan 18 yr. old daughter who just finished her 1st year in college. she is a theater major. it takes about 7-8 hrs. to get to her by car. as u can imagine this is difficult for me. my daughter was 8-9 when i was diagnosed but didnt really get this sick until she was about 13. shes been very angry about it. sometimes, even though she doesnt mean to, she takes it out on me. that hurts more than anything.i have a wonderfully supportive husband, but nobody really "gets" it sxcept someone else who has it. i have only a couple of friends left. im sorry. i had no intention of unloading on you. i guess im having a worse day than i thought.
Posted 5/30/2009 5:49 AM (GMT 0)
Nurse2 -- try to hang tough a little longer and surely you will get some relief.........the flares are awful, aren't they? Maybe it would be a good idea to check with doc for help.........we're here for you........sometimes a good cry helps me, too...

CBear -- Welcome to the FaMily! This forum is truly a godsend, or was to me, anyway. I felt so alone till I found it! You don't need to worry about letting off steam, asking questions, asking for support, anything. There are lots of caring folks to post back, even if they don't always have answers. It helps so much to know they're there.... I am fairly new to this site and I'm just now getting around the 'puter halfway well, but nobody has ever criticized me for it -- you're safe here!

To both of you -- I'm putting my arms around you and giving you a gentle hug -- you'll be getting lots of those here........
luv ya both -- we're thinking about you........
Shash :-)
Posted 5/30/2009 7:29 AM (GMT 0)
cbear-- I really understand how you feel! I posted a very similar post a few days ago, when I first found this site. Just that first step of letting it out and knowing that people are here to listen, comfort and support will really help, trust me. You are very welcome here, and never hesitate to vent or unload. The courage you show by letting your feelings out could spur someone else to do the same thing, and sometimes just releasing like that can be a therapeutic experience in itself. Bless you and please take comfort in the knowledge that you're not alone.
Posted 5/30/2009 8:05 AM (GMT 0)
Hi all, I am also fairly new to fibro. Since I started medication six weeks ago, which brought some relief (some!) relief I've been going back and forth between being tough and strong, and thinking, "wow, why me?? isn't life hard enough??" I've been thinking a lot about fibro and most of all this forum. I have always believed that I am not given more than I can bear. Mrs T is right - having the courage to introduce yourself can cause others to do the same. I "lurked" on here for a couple of months when I began to suspect I had fibro, and because it is welcoming place, especially for newbies. I learned a lot on this site, to assist a speedy speedy diagnosis. And yes, it feels SO GOOD to know there are SO MANY PEOPLE out there who have what I have. I think I was meant to bear this fibro for a reason, but am still wondering exactly what. Remember you are not alone!
Posted 5/30/2009 1:49 PM (GMT 0)
Nurse I'm so sorry your having such a long horrible flare. You have several things going on that causes pain. Have you had a good blood workup to check your vit D, B12, magnesium and thyroid??? Have you tried the malic acid/magnesium that has helped some on here??? I'm one of the ones that can't take it. I think the amitriptyline is keeping the pain at bay for me and finding out recently my D was low and getting on supplements has helped with motivation and energy. I really hope they find something soon that will help.

 

Hi cbear and welcome. I'm sorry your having a hard time of it right now too. I'm sure your daughter gets frustrated too and wants her mother to be normal and not have this DD.

 

luv and hugs

Marlee

 

 

Posted 6/5/2009 2:28 AM (GMT 0)
Thanks to everyone for their comments and hugs. Yes, you really find out who your true friends are when you are chronically ill. I had seven surgeries in three and a half years and ended up with three friends left.  Sad, isn't it. I have a wonderfully supportive family and they always try to help....too much sometimes. I need to do somethings myself. I have noticed I'm having some muscle weakness. I know that I haven't been doing a lot of walking lately (like at a mall or something) but I find it hard to get off of the couch or up out of a chair or out of the car. Going up and down our stairs is horrible...just as painful as it was before I had both knees replaced. I decided that since what the doctor suggested for the edema (restricting  fluids) wasn't working that I'd do the opposite. I have been drinking water with lemon in it and for the first time in weeks you can see my shin bones and my feet aren't swollen. The weight however has not gone down any. I guess that will take time. Thanks again for your support.

Nurse2

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